Remembering those who can’t remember

September is World Alzheimer’s Month, and the disease being a form of dementia, all through the 30 days, organisations world over are conducting workshops and awareness programmes in a bid to make the globe a dementia-friendly community. NT NETWORK finds out what the scene in Goa is

Janice Savina Rodrigues|NT NETWORK

Picture this: You wake up in the morning and go about your daily routine, pack your bag, and head out to the market to do your chores, in the afternoon when you return your spouse asks you why have you come home by bus when you had taken the car and that you haven’t paid the bill like you said you would. Then you begin to wonder about the lapses of memory that you’ve been experiencing of late.

Have you ever encountered this or know of anyone who has had similar situations like forgetting if you’ve eaten lunch or forgetting names, places you’ve been to? There could be a high probability that the person is showing early signs of dementia.

Dementia could manifest itself in the simplest of ‘forgetful’ acts and this degenerative disease affects more people than we would like to admit. In fact the World Health Organisation has declared dementia a Public Health Priority. According to the latest reports of the Alzheimer’s Disease International there are an estimated 44 million people with dementia worldwide. This number is projected to increase to an estimate of 75.6 million in 2030, and 135.5 million in 2050.

India is estimated to have around 4.1 million people with dementia. A majority of them are due to Alzheimer’s disease which happens to be the most common form of dementia. Much of the increase is projected to be in developing countries. Presently around 66 per cent of people with dementia live in developing countries, but by 2050 this will rise to 71 per cent. The fastest growth in the elderly population is taking place in countries like India and South Asian and western Pacific neighbours.

Closer to home there have been studies conducted by Amit Dias the assistant professor, department of Preventive Medicine, Goa Medical College, that has revealed that there are around 5000 people with dementia in our state alone. Many of them have not yet been diagnosed due to lack of awareness. “Goa has an increasingly high rate of elderly population who is living by themselves or who don’t have the adequate support. With the youngsters migrating abroad or working elsewhere a lot of old people who don’t want to move out of the state because of their comfort zones are left to take care of themselves,” adds Arati Sinha from the COOJ Mental Health Foundation which also runs an elder care programme. In her interactions Arati has found that there’s a high number of older population and thus the corresponding number of dementia cases in Goa is increasing.

What is dementia?

“Dementia is a condition that affects the brain in older adults leading to progressive memory loss to the extent that they cannot perform their day-to-day activities. It starts with losing recent memory such as forgetting that they had breakfast and progresses to slowly wipe out memories of the past including the memories of their loved ones around them,” says Dias, who is also the founder secretary of the Dementia Society of Goa, the honorary chairperson of the NGO Sangath and the Goa coordinator of the National Dementia Strategy, ARDSI.

A great deal of research has been done in the pathology in Alzheimer’s disease, since the time of Alois Alzheimer, more than a century ago, that suggests that the brain of a patient shows dense plaques due to certain abnormal proteins. This is also associated with oxidative stress, inflammation, synaptic loss which is often seen in elderly people but in some rare instances, this disease can even occur in people as young as thirty.

In simple words, our memories are like a barrel and when you have dementia the topmost memories or the latest ones go off first, so what you remember is your childhood and basic memories. “It often happens that most people suffering from that condition tend to forget that the house they are living in currently is their own and they go in search of the house they lived in while in their childhood. This is a very common trait that they will pack their bags and say we want to go home,” says Arati.

Signs to look out for:

l Memory loss that affects everyday life

l Losing conversation threads

l Forgetting the names of everyday objects

l Misplacing items or putting them back in the wrong places

l Difficulty judging distance or colours

l Confusion about a time, place or route home

l Problem solving and planning difficulties

l Lack of judgment

l Mood changes

l Becoming less sociable

“Memory loss, difficulty in reasoning and problems of language, mild cognitive impairment are seen in the first stage,” says Arati about the warning signs of dementia. Generally people associate forgetfulness with normal aging but the experts say that this is not normal and the biggest challenge is educating the public about this fact. “We know of a lot of old people who are very sharp when it comes to memory and reasoning. If you see someone who on a regular basis starts to forget things as small as what they ate the day before or any appointments they have missed, names and faces of people then they could have dementia. Of course, forgetting names of children and family is quite advanced; it should not get to that level,” she adds.

People also tend to forget how to speak and they don’t remember words. “There’s a lady in her 90’s who comes to the centre and has a problem where she can’t remember the right words. Even when playing some game she has the concept right but will find it difficult to get the right word for it,” says Arati.

There could be behavioural changes too. If you were in a place you are not able to remember or don’t have any control over your environment, it would get you frustrated and make you cranky. Very often we take it for granted that seniors and old people are generally grumpy, but we don’t realise that the person is grumpy because he is not able to cope with his environment. “Not remembering things makes them grumpy and it is often more anger towards themselves rather than the outside world,” she says.

Efforts by individuals and organisations

Dias has been conducting several workshops and training programmes for senior citizens, caregivers and home nurses. He believes that people with dementia are best taken care of in their own home, but the family members need support and have to often learn the techniques to deal with the disease and the problematic behaviours that are associated with it.

Under his guidance, Sangath has developed a home-based psychosocial intervention programme which helps empower the caregivers to improve the quality of life of the person with dementia. The Dementia Society of Goa has also started the ‘Mind It’ programme to spread awareness and educate school children in understanding the signs of dementia and adopt a brain healthy lifestyle to prevent it.

“There are various aspects involved in dealing with dementia. For example if someone is finding it difficult to do daily tasks, he is helped with doing it in a particular way; if his food is cold or it is not the kind of food he was normally eating, we then need to look at how we can solve all these problems in a psycho social manner. No drugs are given; it is all to do with how you behave and tackle the issues,” says Dias. This intervention programme is free of cost and can be availed of by contacting the Dementia Society of Goa or Sangath.

COOJ on the other hand works on a more institutional level. Being the only other organisation working towards seniors, they approach aged homes and have recently started a day care centre for seniors, especially those who run a risk for dementia. “Honestly every elderly person runs the risk of dementia. So what we focus on is precautionary measures where we keep their cognitive functioning intact. Dementia is a disease which we can’t avoid or cannot cure, but we can delay it and the quality of life can be improved for as long as possible,” says Arati.

COOJ works on projects that are generally 8 months long at aged homes with group sessions and activities like playing games, bingo, dance, music, or anything that makes the aging people come out of their rooms and interact with each other. In these months the team also trains staff of the homes to carry on the work. “Mental health is often pushed at the back and physical health is given more priority. That is why we insist on a volunteer from the home itself who can then continue the programme in our absence.”

The COOJ centre at Bastora has a memory clinic where assessments are conducted for people having memory problems and they can be given proper step-by-step diagnosis and be treated accordingly aided by several activities.

Treatment

We now understand that Alzheimer’s disease, like heart disease starts occurring much earlier in life, much before the onset of symptoms. Research has proven that lifestyle risk factors known to cause heart disease are also implicated in the causation of Alzheimer’s disease. “A lot of research reveals that the Mediterranean diet can prevent the onset of Alzheimer’s disease. Ingredients in our food, our spices, turmeric for example has a lot of potential in preventing and also modifying the progression of the disease. The focus has therefore expanded to include prevention and advocacy for promoting brain health,” says Dias.

Experts are propagating the act of delaying the onset of the disease more than treating it. They are of the opinion that if your mind is active and your brain is engaged constantly, all illnesses will stay away as compared to if you are sitting idle at home. “It’s not foolproof and the approach may not work for everyone, but there’s also medication you can take like memory boosters. On a personal level you need to keep doing something that keeps your mind active, something as simple as playing cards with someone, or cleaning up the kitchen. Simple tasks that need you to be involved physically and mentally – puzzles in the paper, reading a book,” says Arati.

Sometimes when a person gets old, the youngsters tend to take away responsibilities of the older person in a bid to help the person on the contrary this could cause them to deteriorate faster. “So ideally you need to give that person some amount of responsibility, especially things that are in their capacity like cleaning rice or helping the grandchild with their studies. Something where the chance of failure is minimal, because if they are given tasks they are bound to fail in, then they will see that as a setback which can harm their confidence and they may not want do anything in the future,” she adds.

Dias says that once the problem is diagnosed we don’t have to lose hope: “It’s not the end of the world; interventions are available in Goa itself. And we try to spread our home care model to other places as well.”

To conclude, the health planners and policy makers should consider the rising tide in dementia and prepare to deal with it. The month of September is observed as the World Alzheimer’s Month, with a simple theme ‘Remember me’. Caregivers, family members, law departments, the health department, senior citizens associations should all collaborate and work towards spreading awareness. The recent establishment of the Clara Sadan a home for people with dementia in Calangute seems to be a step in the right direction. However regular training of staff needs to be undertaken and it could be difficult to keep up with the costs, and thus the experts say that there is a need for more homes for people with dementia.

“Join the mission to put dementia on the public health agenda, write to people in the knowhow about experiences and what you think we can do to help families of people with dementia. Several NGOs work towards helping families of people with dementia like the Dementia Society of Goa, Sangath, the Dennis Jarvis Trust, COOJ, and the Alzheimer’s and Related Disorders Society of India (ARDSI). This September, let us remember those who cannot remember,” says Dias who also appreciates the government for the support they have lent in the various endeavours.